Sunday, May 30, 2010

There's always something to learn...

On a little Google journey this afternoon, I found this paper.

You can download it for free, as a pdf, if you want to read it too. But the introduction is almost enough to make me feel a little less frantic about where we are in our understanding of the 'a' word.

That academics are urging us to consider that Kanner's original classification in 1944, might need a fresh look... that can't be bad. That they are also open to examining the biological nature of autism is, in my mind, a step in a useful direction.

It makes me feel less washed away by the power of the 'science' of those with the most marketing power. It gives me faith that some people are getting funding to consider issues beyond the ones that retain either the medical status quo or the best situation for big business.

One of the conversations I like having the least, is the one that follows when someone says, 'Haven't they debunked the whole vaccine/autism thing?' I'm always struggling, backpedalling, trying not to alienate the other person with my 'crazy hippy' thinking, but also keen to change their minds.

I try to say, proof is relative, it all depends on your hypothesis. I try pointing out that there's a lot at stake in anyone in any position of responsibility accepting that vaccines might have damaging effects on anyone, least of all children. I try asking them how they would feel if their child changed overnight, lost skills, slowed in their development, stopped connecting with them. I try. I try. I try.

But I can't prove anything. Really, I've come to believe no-one can. I've come to believe that it's science and not the law that is an ass.

Not so much the science itself, but the people surrounding it.

I feel sorry for Andrew Wakefield, because I believe he's on the right track. And it seems a bit like he made a couple of fundementally stupid mistakes. So now, all the work he's done is lost. I can't see that as a good thing... especially not for us - the families swimming down the river of the early 21st century autism.

I wonder why the autism community isn't listened to. I wonder what people are frightened about. Are they afraid if some of the voices in the arguments about autism are correct, their children might be at risk too? It makes me sad that we, as a family, are something people might fear.

It makes me sadder though, to see the autism community fight amongst itself. Who does the 'right' therapies? Who is a fake? Who could be so stupid as to try... (name an intervention)? Why would that group say (name a statement about anything to do with autism)? Why does that person have the ear of that doctor/politician?

Even though those involved would disagree for sure, in my opinion, that in-fighting detracts from the challenges families living with autism face every day.  Even though I've got strong opinions about what's real for us, and what's worked for us, I don't want anyone to think I'm judging or degrading their decisions. Or, more to the point, I'd rather they felt OK about telling me to pull my head in and respect their choices.

It's raw for all of us right now, and the feeling that we're somewhere close to a crest of a freaky river wave is never far from many of our minds.

I hope that 20 years from now, we'll all be slapping our heads saying 'Dowp! It was THAT!' I hope we will know why it's being reported in a Queensland newspaper that the autism prevalence rates are doubling every five years, and that 2% of the state's school population has a diagnosis on the autism spectrum (not the 1% that's accepted as the new shocking prevalence rate).

And I really believe that the only way we will get there is to keep reading, keep asking, keep studying, keep trying to find out what the hell is causing so many kids to fall at fundamental life hurdles.

So I'll read the Swinburne papers, I'll read Wakefield's new book, I'll read the news on Autism Speaks and anything else that comes my way. I'll talk to my friends and I'll talk to my foes. I'll just keep trying.

I know I'm not anyone. I'm not in a position of power or influence. But if I'm supposed to be keeping my kid safe and healthy, then it is my job to understand as much as I can about the condition with which he is living.

There must be something to learn.


Lisa said...

I started to write a comment, but it grew and grew and became far too long for a comment. It might have to be a 'response post' instead.

Or something completely different!

Lisa said...

This part belongs here:

I am not surprised that Queensland schools have 2% of students diagnosed with ASD. There are many reasons why a child may not be able to comply with a school's behaviour code.

The education department here recognises one reason as deserving help and treatment (ASD), and any other reason is deemed wilful, therefore requiring punishment, suspension, and expulsion.

Lisa said...

There you go. Linky to the 'response post':